The Naughty Tiny Tyrant

Oh my Ella. She is really something else. We affectionately call her Tiny Tyrant, or TT for short, here around the house. Ella has been out of school for a week and a half now and I don't know how we are going to survive the summer. She misses school, I miss her going to school, I have my fears about her not being in school (but that's for another post.)

Ella's language is again exploding, unfortunately it is mostly used to be defiant, sassy and naughty!! Here are a few of her new favorite phrases....

"Do it myself."

"LET ME GO!!!" (which she screams at me when I try to make her hold my hand when we are walking in public)

"Don't wike it _____ (insert anywhere we are as in Walmart, Hunter's baseball game etc any food you sit in front of her, though she will eat it anyway, bedtime, bathtime)

"Ella turn!"

"Butt fay" Fay = Face

"Poopy head" caught on video below, it was the first time she has ever said that one

I'm sure there are more, just can't think of them right now : )

The problem is I have a hard time not giggling at a few of them, such as butt fay. I mean really, it's funny, and she says it to be funny, and it's just so.......typical?

She is getting pretty sneaky too. She will sneak upstairs and try to sneak snacks out of the pantry. Dump out all of their art supplies out of the cabinet, including her brothers 100+ marker set. She goes in her room and pulls all of her clothes that she can reach off of shelves and out of drawers. Last weekend she got in her backpack (which I had not emptied from her last day of school 2 days prior) and pulled out the dry erase markers that her teachers gave them, along with laminated worksheets, and drew all over herself, taking extra care to pull up her pant legs and draw up to her knees. She came upstairs all quiet and hid behind the curtains. Of course I saw her going back there so ran and grabbed my camera.

She is such a stinker!! Here is a video I took of her yesterday afternoon. I never want to forget her cute little voice saying "butt fay." I can't help myself.

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Ear Pierced!

I was finally able to do it, get Ella's ears pierced!!! I went over a year ago and tried to get them pierced only to be told that her ears are too small. Um, don't you guys pierce new born babies ears? Yep, but newborns have bigger ears than her. Okay.

So I attempted again yesterday. I went to Claire's in the mall. Walked up to the lady at the register and said I wanted to get my daughter's ears pierced, she looks at Ella and says sure! I told her about my earlier attempt and she says "how old is she?" I told her she is almost 4, she says "uh, we do newborn babies ears." Ha. So I tell her that Ella has low set ears that are closer to her neck and that they are really tiny. She says I think we can do it. Anyhow, the poor girl, I must have asked her 100 times if she was sure it was okay, if Ella would be stabbed in the neck by the posts, if the earrings would make her ears stick out, etc. She assured me they would be fine, and suggested I use the little flower earrings because that is what they like to put in babies because they lay flat against the ear. She asked if I wanted two people to do them at the same time, yeah, that would be a great idea! So this other girl comes over and looks at Ella and says "how old is she????" I tell her, wondering if I should explain why this almost 4 year old is so little. And she says "does she talk?" I eye her suspiciously wondering if I am about to be offended when she says " I have a 12 year old brother with Down syndrome. He doesn't talk at all, only signs." Oh. Then I liked her! I told her that Ella is learning to talk and we have a little discussion about what she can say etc, it was nice!

Ella did wonderful. She sat very still so they could clean her ear, then draw on her ear to mark it. She cried a bit when they had me hold her head still, she does NOT like to be held down at all! Then they pierced them and immediately gave her a mirror and Ella stops crying and says "OoooOoo pretty!" and that was it! I think they look so cute!!!

Blown Away

Something has been happening around here lately. I have on several occasions been blown away by Ella. Now, I like to think that I don't lower my expectations for Ella because she has Down syndrome, but I think that I am realistic. Maybe? I don't know. Maybe it is just my coping mechanism so that I don't get upset. The fact is that I know Ella is smart and I know that she is doing SOO good, BUT she has Down syndrome and with that comes the need for a little more help and the need for a little extra time.

Ella's yearly IEP meeting was last week. Usually I am a nervous wreck going into IEP/IFSP meetings. I don't know why but I just dread these meetings. It's a time when you get to hear how different your kid is, and plan for all the extra help that they need the next year, and that is still such a raw spot, and when it gets touched, it hurts. I will say that going into the IEP this year was a bit different, maybe I am getting a little more used to it? Maybe its because at Ella's age they no longer do the evaluations they did when she was younger, you know the kind that says your kid is 24 months and has the gross motor skills of a 12 months old, stuff like that (I do NOT miss those.) I think the real reason I was more at ease was knowing that Ella will be going into the same class next year, and I can't tell you just how happy I am about that!!!


The special ed teacher that visits Ella's class twice a week said that she has NO cognitive or social goals for Ella, so the only thing she will work with her on in class is functional communication. I asked her if she re-evaled Ella, and if she is sure that Ella wasn't behind cognitively. I guess I always question that a) because all I have to compare her to is Hunter and that boy is so smart and b) I've always known that Hunter is smart because he tells me every little thing he knows and has done that since he was 1. I have often said that if Ella could talk (yes I know she can talk, I mean talk like her brother) that we would be blown away by how much she knows. Anyhow, in response to my question they all started presenting me with some of Ella's work, things she does in class etc, and let me just say WOW!! She is doing some of the same work that the "typical" kids in her class that are moving on to Kindergarten are doing. I am amazed!!! Her therapists all had great things to say about her as well, she is making great progress.

A couple of weeks ago when I went in to pick up Ella, Stephanie (Ella's Para) said she had to show me something. The class was told to do a self portrait and Ella drew herself without prompting. I was expecting some scribbles. This is what I was shown.

I had to fight back the tears. This is one of those things that I was just blown away by, I mean, I NEVER even entertained the thought that Ella could draw a picture. I mean seriously? Never. But there you have it, identifiable features, hair, ears, eyes and a smile. Ella's wonderful teachers framed it for me and gave it to me, they are SOOOOO sweet, then they demanded that I make Ella do her homework. Prior to the self portrait the teachers sent home a paper and the kids were supposed to draw their family. Yeah right. I said "you know this is just going to be a lot of scribbles," they said that's fine, have her draw mom and even if it's scribbles label it mom and so on. As I would look up at the board where they hung the others students pictures that they drew, I kept putting it off. None of the others were scribbles. So, that night we went home and did her homework. Again BLOWN AWAY. I did not prompt her other than to say "draw Daddy here," and point to the paper "draw Mommy here" etc. Ella picked her own crayons and did everything on her own, I simply labeled them at the end. Here is that picture..... again, near tears.

Notice Daddy has no hair : ) and Mommy has crazy hair.

I am just so dang proud of her, my heart could burst. She is amazing!!

I realize that Ella is shirtless in a lot of my pics : ) I can't help it, the girl likes to strip. Here is her newest fav thing to do when she is taking off her shirt.

Ella's preschool performance

Last Thursday Ella's entire school put on a performance, in a high school theater, for the end of the year. As I was sitting and watching a slide show that the school had put together, I was a nervous wreck. I seriously felt nauseous. What if Ella causes a big scene? What if she takes off running (which is her favorite thing to do.) What if she cries? She HATES bright lights and loud noises, what if she freaks out???

The slide show ends. The curtains part. There stands about 100 kids (or so it seems) and right in the middle is one tiny little girl. My little girl. She looks like a baby compared to all those other kids. BUT, she does it. She knows all the songs. She stays in her spot!!!

I was even more nervous when the curtains opened and her little best friend wasn't standing beside her (as was the plan,) but part way through the first song her friend shows up and comes to Ella side!! This little girl is SOOOOO good with Ella, I hate that she is moving on to Kindergarten next year.

Anyhow, my mom and I got seats pretty close to the front while the guys sat further back. My mother sobbed through the entire first song, I mean SERIOUSLY sobbed. She turned to me and said "could you ever imagine?" I replied, "no. And especially not at 3 1/2." When Ella was born I NEVER imagined her on a stage. I NEVER imagined her with "typical" kids in school. I NEVER imagined her with a little friend. I guess it was all just to painful to think about because of the "what if's." But there I sat, alternating between crying and laughing. My little girl did it and I was such a proud mama!!!

After the show there was a little carnival. I swear at least 30 people came up to me to tell me how cute Ella is and how great she did. It felt so good, and Ella was beaming with pride!!!

Here are a few pics and then the videos (I did not do so good recording. The videos are shakey in places, but I was trying to hold the camera still and yet watch the performance outside of the camera screen!)

> Ella and her wonderful teacher and best buddy

Night of Stars

On May 7th we went to Silverwood Theme Park (think Six Flags, but smaller) for the Night of Stars, a night the park is open only to individuals with special needs and their families. The person with special needs and one caregiver/guardian get in free and the rest of the family gets in for $12, far better than the usual $40 + a ticket. We had never been and knew Hunter would be SOOOO excited, so we didn't tell him ahead of time, picked him up a few minutes before school got out and headed over to Idaho.

We had a good time, it was kind of chilly (though much better weather than previous years as everyone was quick to point out,) and there were far more people there than I would have ever imagined. It was interesting. I was again reminded of how fortunate I am to have a child with Down syndrome, there are so many more......involved? disabilities, it just kind of puts things into perspective. I did have a few moments that kind of made me pause, at one point we were walking from one ride to another and Ella was walking beside me holding my hand, she was so excited to be going to find "more ride," we passed a group of maybe 5 adults with Down syndrome walking slowly, holding hands with caregivers. I'm guessing they were from a group type home. Anyhow, the group was walking really slow, they all seemed to be very disengaged from what was going on around them. The caregivers were saying hi to Ella and commenting on how cute she, while the adults with Ds just kind of shuffled along. I looked at my little 3 year old, practically running, smiling from ear to ear with pure excitement and thought "is that what she will be like?" We caught up to my mom and I asked her "so, if Ella is already walking faster then them and more aware that means she won't be like that right?" And let me just say that I HATE that I think that way. I always wonder what adults with Ds were like as children. I think Ella has been given so much opportunity that she can't help but to do great things, right? Ella has such a huge drive to do EVERYthing, I really shouldn't worry about her, but I can't help but get scared every once in awhile.

We had a great time, we really did. Ella LOVED going on rides. The kids favorite ride was this little roller coaster called the Little Toot Train (which we quite a few laughs about the name after : ) Ella had a hard time transitioning from the rides, she wanted to stay on and ride again, and she wasn't terribly patient in line, but after all she is 3. Hunter had a fabulous time, and frankly to me, it was more for him, he deserves the perks of having a sibling with special needs, he sure puts up with a lot!!!!

Here are the pics I took! I love this boy. His smile melts my heart.

Ronald McDonald really really liked Ella, it was cute

Ella is wearing Hunter's old shirt, she loves it, she goes around saying "Bubba's shirt"

Something scared her so she clung to bubba

See the nuts in the back???

I know this pic is dark, but it's so sweet!

My favorite pic!

Mother's Day

Before I post my photos I want to take a second to ask everyone to pray for this sweet little girl. This is the other Ella Grace (here is how our lives intersected.... read here and here) and this precious girl has just started a fight against Leukemia. Pray for her as she fights cancer and pray for her family!

I got a laptop for my 30th birthday which was 2 weeks ago and I am now promising to be a faithful blogger! I'm setting a goal to post at least once a week : ) There are a lot of things I have skipped over so I'm going to be posting pictures from the last several months along with some little stories!!!

Anyhow, yesterday was Mother's Day and aside from having to try to keep my kids quiet most of the day as their poor father was sleeping (he works 8pm to 7am) I had a great day. I got to spend some time with my mom on Mother's Day, which I just can't tell you how wonderful it is having her live so close!!! We went over to my friend Mary's house for dinner, she made a very yummy meal, and the entertainment was great (that would be Ella and Riley, those two are quite the pair!) Here are a few pics from yesterday.

The first is of me and Ella just after midnight Sat night/ Sun morning, 2 times last week Ella climbed up in my lap and fell asleep, I can't tell you before then when the last time she did that was.... just so happened that I had the camera right next to me because I had been loading pics into my computer. So after sitting this way for a couple of hours (I just love to snuggle with her, the weight of her little body resting on me brings tears to my eyes) I decided to remember the moment with a picture!!

Next is my favorite little guy. He went up to his room to play Legos and came down with a "present" for me, he did a picture of a vase of flowers on his Lite Bright. Oh, I just love him to pieces, I dread the day he becomes too cool to be so sweet and sensitive. Just look at that face, in his PJ's and t-ball hat, never has there been a sweeter boy, he is my amazing guy, the baby that first showed me what it was like to be a mom and how to love unconditionally and with all of my heart.

Here are pics of Ella and Riley, they are just too funny together.

After dinner they were playing a little game where they bossed my mom down to the end of the hall and then had a race down the hall, into the kitchen, out the other side into the living room then back down the hall. Over and over and over again. It was so funny!
Here is a very short video of the action, it was all I could get before my memory card was full. The laughter is priceless!!!

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